Maddie went into hosp yesterday as an out patient for some bloods to monitor glucose tolerance. They also took bloods for cortisol levels etc while they were there. They also looked for diabetes insipid us too.
We were sent home and told the results would be back Friday.
Anyway, last night T 10pm, the dr called from hospital saying she has to be admitted todY as her cortisol levels are way too low. They will do the synachen test on her along with scanning the adrenal glands etc too.
I'm scared. What does this actually mean? Will it reverse if she was to come off Pred? Are there any questions I need to ask today?
My poor baby, yet again! She's only two!
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I keep getting admitted for this at the moment - if it's not this asthma it's this - I've had 11 admissions in the last two months and I'm really fed up with it because I can't seem to break the cycle - mine's from long term Pred too.
What they should do is give her IV hydrocortisone and fluids. I find I perk up really quickly - back to bouncing within 4 hours. But I also deteriorate really quickly if not given the correct treatment, so it's really good that your hospital have spotted this and got her in so she doesn't go into crisis - been there and it's really not nice.
I don't know about long term - they've told me variously my adrenals won't/may/will recover so I don't know what to believe. At the moment I'm entirely dependent on replacement hydrocortisone and if I get sick or don't keep it down, my cortisol levels plumet. Thankfully I've got a really good GP (or possible slightly sadistic, the amount she likes to stab me!!) who regularly check my cortisol levels and will do an urgent test if I'm feeling a bit off as she knows how much I can deteriorate, plus she can then say to the hospital (mine is awful - sometimes they won't even give me the treatment I need which has then sent me into crisis) this is what's happening and you WILL treat it correctly. She'll also give me IM hydro if there's any possibility of delay as that will hold me for a while.
I'm hoping things will reverse, but my asthma is so unstable I'm struggling to get off the Pred and from what I understand unless you're off it totally, the adrenals continue to be 'lazy' and won't start trying to work again. Caught in a bit of a difficult situation because constantly being ill/admitted due to low cortisol and the effect that has on the body = worse asthma control = more pred = more cortisol problems... I need to get my respiratory consultant and endocrinologists to work together which unless I lock them in a room together doesn't look like it's going to happen.
Sorry I couldn't offer a more positive outlook - though I undersand that this is really individual so your daughter may be totally different. Hope things work out well for her.
What is this, should i be worried?
Ive been on high dose pred since april now!
Charlie - long-term in terms of this complication normally means years of Pred. My consultant says I've been very unlucky to have this even after 3 years of Pred, def not a given if on Pred. I wouldn't worry too much - when you're ready to come off Pred, they'll want to wean you slowly (cutting down a little bit every few days or so) but for most people that's fine. My adrenals just decided they couldn't be bothered to make any cortisol for me!! It really is a slim possibility though, so I wouldn't worry, and at the moment you'll be on the Pred because you need it to support your lungs.
After 3 days in costa having her veins battered with needles etc we are finally home, bless her.
She now has a diagnosis of adrenal failure. Her cortisol levels are practically non existent. Poor thing, only 2 yrs old!
I asked whether she should come off the pred but they said no and they can't see that being able to happen now at all.
All a bit sad to be honest
Ratty, what are your symptoms for your adrenal probs? Do you know what your level is? Does it fluctuate much? Sounds like you have an amazingly supportive gp.
I'm glad she's home, and she must be very brave to cope with all the bruises - I've an adult sized body and my poor veins can't cope, so I hate to think what it's like for a child. My consultants are also having the 'can I come off Pred' discussion because my lungs aren't coping. Did this low level happen whilst she was taking the Pred? If so, it would be helpful to find out why because that shouldn't happen, as the Pred increases the seroid. I have had the same, for me there were concerns over absorption (particularly because I insist on coated Pred) and also of course as soon as you start vomiting you don't keep oral meds down.
Symptoms, fairly classic presentation: vomiting, diziness on standing, grogginess, lower back pain, just not feeling/looking right (my GP can see what she calls 'the look' well though I can't actually see it...), then if things progress to crisis, being very irritated (not normal for me) and confusion is the biggy - last time I was in they did the usual silly questions, asked me what day it was and I answered 'December'! Apparently I got a bit annoyed too when told the day wasn't December and that wasn't even a day! Got really frightened when they asked me what I was studying and though I had all my books etc. with me, I had no idea what subject I was studying or why I was at uni.
I hope they can sort your daughter out. I'm actually finding this harder/scarier than the asthma because the consultants don't seem to have the answers (well the asthma ones don't all the time, but still it 'feels' different).
Cortisol levels - all over the place! Most have been under 100 (low) and I had a flat response to the synacthen test, only raised by 15. Supposed to be something like 600 in an adult... When very unwell I've had drops to 39 and 24. The docs get a little worried then. I had one random reading of 300+ so they were saying all cured - turns out it was after I'd had a whole load of hydro IV to fix me - D'Oh!
Thanks so much ratty. Sounds like you've been through the wars.
Maddies first cortisol level was only 16!!!! We had a call at 10pm from the hosp and was immediately admitted! Her second level was 23!!!! So all in all a very scary few days
She's on daily pred and budesonide anyway. They've taken tests to see if is congenital etc but when we were discharged they said they truly feel it's caused by her pred. She's been on so many short courses of high steroids (approx one a month) since she was about 7 months, and now is on it daily. We were told it's probably that er adrenal gland has become lazy and stopped producing. We have a few more tests to come bk before it's certain though. In the meantime we have emergency hydrocortisone injections etc.
What have been the causes for your crisis'?
Thanks so much for your replies. It's been great to hear from someone else with it.
Emily x
Hi my son aged 8 has adrenal insufficiency - casued by asthma steriods - he is now 8, diagnosed 2 years ago. It is amzing to readon asthma uk website of someone else with similiar - don't know anyone else with this. he takes hydro cortisone twice a day - 5mg in total. What dose of pred is Maddie on? daily hydro does help - our son has much more energy and less aches/pains on it.
Jackie- I agree it's so comforting to read here of folk in same situation.
Maddie is on in total 5mg a day too. 3mg of pred and 2mg of budesonide. I haven't noticed any pains she's had at all but I guess with levels so low she must have. She's tiny still so not sure if she'd say.
I've found this diagnosis harder than the asthma one. So confusing and scary. It's as brittle as it gets isn't it!!
My adrenal glands became lazy after too long on Pred and not having to do any work. They forgot that they had to work if there wasn't Pred going in! Crisis is caused when you don't make and don't/can't replace the steroid, so when I've been repeatedly vomiting and not keeping meds down for instance (hence the hydrocortisone injections). The consultant is wondering if I have something else totally unconected going on that initially causes the vomiting/poor absorption which then leads to low cortisol levels, more vomiting, etc. - vicious circle really.
They are however hopeful that my adrenals may recover, but it will be quite long term, and isn't going to happen unless I can stay off the Pred, which, unless there's some miricle cure invented, I can't see happening at the moment.
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